Dr. Vera Bernard-Opitz
When I received an email from an autism program for children with ASD in Kolkata about 10 years ago, I had no idea, that this would drastically change my perspective on international needs in Autism and ways to help. The request for support of an Indian program, which had been in session for several years, was followed by a video-session, which was my very first experience with online meetings.
Cultural expectations influence teaching targets and teaching methods
From having worked in Singapore I was familiar with translation issues and cultural considerations regarding teaching targets and teaching methods. In Singapore, parents often objected to teaching their children hand signs since that would look odd in public transportation. Pictures and later iPad programs on the other hand were welcome as less “stigmatizing”. Also, the suggestion to use communication targets during meals was frequently rejected since many Asian parents were afraid that their child could suffocate while eating and talking. Cutting with a knife or even cutting with scissors had also been frowned upon as too dangerous a treatment target. I also had witnessed that the live-in housekeepers were under pressure from the parents to keep the kids quiet and well behaved, thereby giving in to attention-seeking behavior problems.
Therapeutical and technical know-how were widely divergent.
What I hadn’t been aware in Kolkata was the helpless ways so-called “experienced autism teachers” used physical restraint and poking as ways to control behavior. On videos sent I was stunned, that there was barely any teaching or play-material. Teaching targets and tasks tended to be in line with cultural routines, such as learning to serve the father tea. One teenage girl worked for smelling tea as a reinforcer.
On the positive side, parents and teachers who attended online sessions were highly motivated to help their children and students by behavioral methods. Video and audio functioned very well, so I was surprised by the advanced technological know-how in comparison to outdated treatment practices (which thankfully improved significantly over the years).
In remote areas payment for services needs to be adapted.
When payment for my service came up, the head of the school indicated his willingness to pay, mentioning a restricted budget. To make it feasible, I asked what a medical specialist would be paid. Since this was quoted as one dollar per hour, I suggested to rather invest this in teaching supply.
While my involvement with the program ended with some questionable local promotion of my services, the Indian children, teens and parents kept being on my mind. The option of supporting families in other remote areas through video-consultation and an online resource website was born.
Advantages of Online Support in Autism
Meanwhile I have seen many mothers, fathers, students, teachers and home-teams online from my home in the US from different countries. Often parents in remote regions such as Pakistan or Mongolia cannot get any direct help for their children. So technological advances through different online platforms are a welcome option.
What is the focus of consultations (e.g.)?
Consultation, training and supervision of parents and their home-teams as well as co/therapists, students and teachers.
Consultation of affected adolescents and adults
Analysis of challenging behavior and development of behavior plans
Development of Individual Education plans
Development of communicative competence, adequate stress-responses, social and organization skills
What are the advantages of online-consultation (e.g.)?
· Consultation in the home (especially for remote, underserved areas)
· No need for traveling, less cost
· Time-savings for consultant as well as the family and their teams
· Improved understanding of complex behavior problems through filmed behavior across different settings
· Easy feedback to supervisees through videos of co-/therapists or trainees
· Familiar environment for individuals with ASD with fear of outside contact
I have also offered support in developed countries, such as Germany; sometimes just for an hour of free online consultation, sometimes over a period of several years. While a direct contact in my autism practice in my former hometown Hildesheim has advantages, I enjoy the fact, that through an online “peek into the everyday situation” I can more easily adjust my consultation to the actual setting of the individual with autism and their family. Instead of a clearly structured meeting-room the online session alerts me to possible reinforcers, such as a cat getting the child’s attention, the family atmosphere, such as Dad in his bathing robe waving happily in the background, a screaming toddler, who needs attention or a child with Asperger threatening to destroy the remote if mom doesn’t give him immediate help with his game.
A major part of consultation of parents and teachers are short video-clips of relevant situations: this can be a setting on the playground, a family dinner, a game with a sibling, a trip to the supermarket or the tutoring by the school assistant in class. It is self-understood that video consent must be signed by everybody involved. Every other week parents and their teams meet with me online for supervision, where we discuss (up to 10!) sent short brief video-clips of therapy sessions, task overviews with behavior and skill goals.
For teens and adults consultation has also made online support an important option. Dealing with social isolation, communicative and social challenges, depression, anxieties, school- and work-related problems are frequently the focus. Often this is the only possible option to get help by someone experienced in autism, behavior analysis and psychotherapy. In many countries waiting lists for supporting individuals with Autism are long and patients referred to me tend to have severe problems and a long history of no or inadequate support.
Looking back on 10 years online therapy I am happy that many young children with autism have learned to talk, play and socialize. Some school children have reduced behavior problems, that prevented schooling. They have developed sufficient educational skills so that they are now included in regular school programs. For others inclusive settings were not optimal and they are now happier in specialized schools, where they can follow the school and social curricula in smaller steps. Some have accomplished their training (e.g. as computer specialists) and now are working with or without support, while others are still struggling to find an autism-friendly occupation, that targets their interests and skills.
I am grateful that the intensive engagement of parents as well as demonstrated progress of their children has provided financial support for many ABT-home-programs. I have high respect for parents who often play a core role in their child’s education and training, managing budgets, coordinating involved therapists and educators, and summarizing our meetings often long after their own busy days. Some social work agencies now even alert parents with autism since they have witnessed progress through regular reports based on a team approach and online supervision.
And last not least I admire the young and older adults with ASD who search online coaching or cognitive/behavior therapy because they want to change their behavior to have a happier outlook on life, work or social relations. I am aware, that these options still are not available in less developed parts of the world, but I am trying to contribute to changes for the better.